Rett UK

Rett UK is the only UK charity providing professional support to families affected by the rare neurological disorder, Rett syndrome; a severe, life long, life limiting genetic neurological disorder and the most common cause of profound learning disabilities affecting mainly females (1 in 12,000).

Although present at birth, it is usually undetected until a major regression occurs at around two years of age, when children lose acquired skills and the complexity of the disability is revealed.

Rett UK provides emotional and practical support through a national telephone helpline, local family led support groups and a parent-to-parent contact network all so crucial in reducing isolation. Access to high quality seminars from the UK’s leading experts on Rett syndrome at our regional events provides families and professionals with up to date, accurate information in subjects like epilepsy, spinal surgery and communication, helping them with management of the disability.